There is a lot of repetition in our house. As another mom worded it, my son and I need to frequently figure out what he was thinking/not thinking, find a solution, and work on the action plan. Repeatedly.  Each task he does throughout the day has had to be broken down and addressed. Repeatedly. Chef is a brilliant young man in many areas - he also struggles with not understanding and/or accurately perceiving some things in this world, has difficulties with remembering what he needs to do, has difficulties with organization, and has difficulty "thinking on his feet" when something unexpected happens. Chef continues to not want to have any disabilities but there are occasional days when he seems relieved to be reminded that something he's struggling with is typical of someone living with autism, for example, and that he's not the only one.

I am happy to report that, with much repetition and consistency over the years, Chef isn't requiring quite as much repetition as previously needed when it comes to some of the day-to-day routine. He is now capable of following (though it still doesn't necessarily happen on a regular basis!) the steps to brush his teeth, have a bath, use a toilet, wash his hands, get dressed, put on outerwear, and make his bed without any how-to reminders. He is consistently able to successfully make a pot or cup of tea. He sometimes forgets to turn off the stove/oven, and if he hasn't made something in awhile (such as rice) he'll sometimes forget how to make it and instead of looking at instructions will just guess, but Chef is otherwise capable of preparing a meal. He still has difficulty with independently gauging amounts and will still eat huge amounts of food at times (a large yogurt container full of lentils for a snack) when not reminded otherwise of appropriate amounts. Shovelling snow no longer needs how-to reminders, nor does putting out seed for our neighbourhood birds.

There are still many winter mornings when Chef walks out the door with only one eye clearly visible and his other eye partially hidden by his balaclava before being reminded that it needs straightening. This morning at -42 (with windchill), he still needed a reminder to wear his hat and scarf to the bus even though he'd just been reminded a few minutes ago when he'd been out for a couple of minutes just prior in order to keep his routine before I called him back to wait inside til the bus arrived (Chef's goal time to be outside in the mornings is a few minutes BEFORE his bus arrives, otherwise the bus will be sitting/waiting while Chef runs around inside the house quickly getting ready instead of getting ready beforehand). He almost always puts on his jacket now AND zips it up! (***Remember when Chef wouldn't even put/keep on clothing at all?? Hooray for wearing clothes now!!)

Visual and verbal how-to reminders are still required for chores. I'm happy to report that Chef is starting to do these more regularly and is starting to initiate them on his own! Chef's internal sense of what needs to be done to have a healthy space for himself is evidently lacking at this point, but he IS presently on-board with doing half an hour of weekly chores and with cleaning up the kitchen on a daily basis with visual and verbal how-to reminders (and without the meltdowns he used to have over this!) Chef still requires visual reminders as to how to do a chore and verbal reminders along the way, but his willingness to start a chore and accept guidance regarding a chore has definitely come a long way.

We continue to work on "up in the morning and ready for the day" - it's slowly coming along. One of the things that I believe has helped tremendously lately has been to limit the time that Chef now has available to him to get ready in the mornings in order to narrow his focus to what needs to be done to have a successful morning. If Chef consistently uses his time appropriately (focusing on what steps are required in order to get ready without meltdown/backlash at mom), more time is added so Chef can enjoy a slower pace and/or a relaxing addition (reading, extra coffee, etc.) to his morning after getting ready. This has been much more successful time-wise as well as growth-wise compared to mornings where Chef has had over an hour to get ready. This also gives Chef all morning to relax in his room from the time he wakes up (which can be anywhere from 5am-7:30am, with Chef going back to sleep most mornings) til he needs to start getting ready.

Chef now almost always remembers to say, "Hi Mom. How was your morning?" when he comes in from school. We've recently added, "What did you do this morning?" and he's started occasionally saying, "Oh, that's good" after hearing my response. Sometimes he'll even ask a further question - this is brand new and wonderful.

Anger. Again.

Today Chef attempted to make black bean brownies. He's frequently talked about this since I initially showed him a recipe and suggested he talk with a friend of mine about details because the recipe I'd come across didn't explain whether or not to drain the can of black beans required.

Chef did eventually ask my friend when reminded, and I don't recall whether it was my friend or Chef who'd written down the specifics of the recipe, but Chef happily came home with the detailed recipe in hand.

Chef's attempt at black bean brownies didn't work out today - at all. After  close to an hour, the contents of the pan were still extremely soupy. When looking at the pan, I asked Chef if he'd followed my friend's instructions about draining the beans. Chef already had that dark, angry look about him when he growled a "no" in response. I thought about how to handle the situation - the "soup" could be put into a container and used in smoothies I supposed, but I knew very well that Chef wouldn't  relax until he'd inhaled the chocolatey mixture and the last thing he needed would be to have all those ingredients marching through his system in one fell swoop. I told him we'd have to dispose of the brownie soup, explained the reason, and said he could try again  another time using the full recipe. Chef kept saying he could just cook it longer. I shook my head and  started to say that we all have times when we're trying something new and it doesn't work out, but Chef stormed off in a huff.

Since that moment, Chef has responded with that same dark, angry cloud to almost every interaction this afternoon and evening. Right now, he's outside snarling after I told him it wasn't acceptable to leave feces in the toilet bowl - his initial response was that it wasn't his fault because he thought he'd flushed. I said I understood that but that it was still his job to make sure the bowl is empty, especially when there's a sick person in the house. Chef started yelling and spitting words and continued verbally escalating as I walked away. I know Chef well enough to know this was a sign that he wasn't going to calm on his own. I turned and put my finger to my lips with a quiet "shhh, calm" but to no avail. I put my finger and thumb on his top and bottom lip, accompanied with "shhh, calm" and he immediately pursed his lips together and he immediately became quiet but started bobbing his head up and down and sideways. I stepped away into the next  room and reminded Chef that he needed to clear the toilet and deal with his anger immediately and if he couldn't do it inside, he'd need to take it outside - he flushed, stormed down the hall, put on his outerwear (something he wouldn't have bothered doing in past years!), screamed at me, and slammed out the door.

***********
Chef went for a short distance at a half-jog sort of pace, came inside and was still not calm enough to be inside so went for a run then came in and actually apologized and was able to have a reasonable discussion over what had happened. He's now calmly folding paper cranes. This is a very, very quick turn-around for Chef, who has often held onto his frustrations for hours/days - I'm hesitantly hopeful this is a sign of growth and positive things to come regarding managing frustration/disappointment/anger.
 

Many of us have explored various sensory enhancements with our children. Chef has had a myriad of items over the years and, though none of them have survived to date, Chef has certainly shown appreciation of their presence.

For parents who might be new to the idea of using sensory enhancements, here's a great link:

http://www.sensory-processing-disorder.com/sensory-room.html

It's been a challenging holiday season. Urinating in the bedroom (which hasn't otherwise taken place for months) started again a few weeks ago, evidenced by the large, urine-filled vinegar bottle discovered in Chef's room - I'm glad a container was being used.

 On the morning of Dec. 20th, there was an all-too-familiar-and-really-bad odour coming from Chef's room. Nothing was visible, which made my heart sink with the thought of having to check the carpet and vent, but as I followed my nose I found the source - four incontinency briefs stuffed in the 3-inch space under Chef's desk. I called the school to let them know Chef was accessing someone's briefs. When Chef arrived home he made it clear that he was furious with me for contacting the school. I reminded him that it isn't cool to take someone's briefs and even less cool to use them to hide urine in his room, and that he needed to take the briefs out to the garbage immediately. Chef stormed up to his room, came down a few minutes later with a bag of garbage, and stormed out the door. When he came back, he sullenly had a bite to eat then stormed back up to his room. Hours later, Chef had made four trips to the washroom but didn't answer when I called from the bottom of the stairs so I went upstairs and reminded him through his door that his respite family would be picking him up shortly and he still had things to do to get ready for Christmas. I heard what sounded like a book dropping on the floor - I asked Chef if he'd heard me and heard a low 'yes' through the door. An hour later Chef still hadn't come down so I called him from the stairs. "I know!" was the response from his room. Chef still didn't come downstairs and didn't come down when called for supper. At 6:30pm, Chef slowly came down with a very grumpy look on his face. He slowly started getting a rag and cleaners out then asked if he could have supper. I reminded him that he was supposed to have supper but had chosen not to come when it was ready, then asked Chef if he was going to get himself a quick snack before getting his chores done. Chef growled and humphed then started slamming around in the kitchen. I reminded him that he could be appropriate or take it outside til he was ready to be appropriate inside. Another growl but no more slamming, then Chef moved on to whining about not being able to find anything for a snack. A few minutes later, Chef's respite family pulled in and suddenly Chef was racing around putting food into containers. "Am I staying til Monday?" he asked. "No, we talked about this. You'll be coming back Saturday night because you need Sunday to get yourself ready for Christmas. There's no more urine in your room? You took those out to the garbage?" "Ya, you even SAW me!!" And with that, Chef was away for the next few days.

On Saturday, I noticed a terrible smell coming from Chef's room - similar to the Thursday before, but stronger. When I opened the door, I immediately saw clothes and bedding rolled/bundled all together on Chef's bed. I started unbundling, gagged, rebundled, and looked at the time. The briefs were still there in the room. This time he'd bundled them inside clothing and bedding. Chef would soon be home and the bundle would wait til then.

As soon as Chef got home, he was ordered to remove the entire bundle from the house. There was much stomping and grumping but he took everything out to the garbage and disinfected his mattress. The next day was filled with hours of Chef grumping about having to empty out and clean his room - it took hours. By suppertime he just needed to finish disinfecting the walls, bedframe, etc. That was a week ago. The past week, Chef has been mostly polite and pleasant at other people's homes but the same certainly cannot be said for his time at home. In addition, I've been down the last few days with  terrible cold symptoms along with bacterial conjunctivitis. I guess I could look at it as things being worse because of it, but I figure if things are going to be rough through the holidays, being sick may as well happen then.

Today is December 30th. Today is the first day Chef has been pleasant at home since the 20th. He got up, exercised, bathed, combed his hair (!!!), etc., made lunch, did dishes, asked if I wanted anything, and is now resting in his room. I sure appreciate turn-around days.

A solid list of ideas for helping your child (and yourself!) through the holidays:

http://fasdthinktank.blogspot.ca/2012/12/holiday-strategies-for-fetal-alcohol.html

All the very best to you and yours,
Christine

Folk Fest

Chef and I were privileged to receive bursaries for our local Folk Fest Retreat this year. Chef received workshop instruction from Abigail Washburn (who did a terrific confidence exercise for Chef during her workshop; thanks Abigail!), Kai Welch, Martyn Joseph, and Willy Porter.

Chef also had two bouts of one-on-one time with Martyn Joseph.  Chef had never touched a tenor guitar before that, and has only spent about an hour on his 6-string in the past year, but with Martyn he learned a song on the tenor guitar. I'll see if I can get the recordings set up here at some point.

Abigail told me Chef had no trouble picking up the banjo exercises she taught in her other workshop Chef attended. Chef hadn't touched a banjo before the retreat.

When we arrived back home, Chef and I decided to pick up a ukelele for him to start on before investing in something pricier. Yesterday he carried the uke and good ol' Mel Bay's ukelele book downtown and hung out on a nearby bench while a friend and I sat outside of a local coffee shop.

An hour later, Chef came over and played a two-chord song for us. He played at a good tempo, and without mistakes.

 Prior to sitting on that bench, he'd never picked up a ukelele.

It's always exciting to see Chef pick up a new instrument. He's had the same experience in easily picking up tunes/songs on keyboard, penny whistle, and guitar - but thus far, he's always chosen to not continue because "it's too much work."  It would be great to see that way of thinking change someday. In the meantime, it's a real pleasure to see what he's capable of doing when introduced to a new instruments.

There's often a fine balance between responding and hoping for a moment of connection and learning, and not responding. Sometimes we as humans mess up that balance and other times everything just lines up beautifully and the sun shines and the birds sing and the flowers bloom and...well, sometimes we stumble into those moments and hope that the seeming lack of negativity from the other person can be accurately translated as a moment of connection or some degree of understanding.

The past two mornings, Chef has slowly come downstairs 20 minutes later than he's needed to in order to have a successful morning.

When reminded that he was running late and needed to quickly get his list (with his morning routine on it because he has difficulties with organizing/remembering and doesn't want me reminding him of anything), Chef's response both mornings has been to tell me that he's late because I took his clock.

Chef continues to be guided towards responsibility. Sometimes a topic requires a lot of reviewing for the responsibility piece to start to settle in Chef's mind. The past two mornings, the clock has been one such topic.

Part A: Chef's been given a few clocks over the years, including two Thomas the Train alarm clocks, a travel alarm clock, a clock to wind, etc. Each clock has met its demise with the exception of one clock Chef received from my grandmother. In addition to the sentimental attachment, this particular clock also sings out various bird calls on the hour. To make a long story short, Chef seemed to find the bird calls to be very, very enjoyable regardless of the time of day or night - and for now, the clock resides in Chef's room without its batteries.

For years, Chef has been getting up in the mornings without the use of a clock. On some mornings when he's gotten up later, he's angrily told me he'd slept in because he doesn't have a clock and was reminded that he could gladly replace the many alarm clocks he's been given by earning money and buying one for himself. Finally the day arrived when Chef had money (gift money) to buy an alarm clock at the thrift shop. I'd suggested he choose one that uses batteries or could be wound, with the added bit that I'd had a few late mornings over the years from "plug-in" alarm clocks not going off because the power had gone off during the night, and that I only use a battery-powered alarm clock now. Chef chose an electric clock.

Part B: Chef has needed frequent reminders over the years to close doors - front door, back door, refrigerator door, freezer door, cupboard doors. Last winter he left outside doors open so often that I warned him that he would soon need to start paying for the heat he wastes. Being an environmentally-aware family, I've also often talked with him about the importance of appreciating resources and not wasting what we have. Chef was warned this past January that I would start keeping track of his financial responsibilities for wasted resources in February. I knew, however, that his would mean little if anything to a young man who doesn't really have a grasp of what value means so the first time I pointed to the door he'd left open and announced that would cost him 50 cents and would cost him more if he didn't close it immediately, I also attached a "real value for Chef" idea to the amount. "This is costing you 50 cents or half a bag of potato chips or the price of a book from the thrift shop." Chef slowly came over and closed the door with the response, "Some books are only 25 cents there."

Fast forward to the recent morning when we'd had to air out the house because of body odour. After all was said and done, I eventually let Chef know that he'd have no extra electricity in his room for awhile because of all the heat that had been wasted through the open windows. The only electrical item in Chef's room (other than his ceiling light) was the clock.

Part A and Part B Together = This Morning:
"You took my clock, that's why I'm late."
"Responsible communicating, please. What word should your sentence start with?"
"I? Um, I'm late because you took my clock."
"That doesn't work."
"(sigh - but no growling/yelling/swearing/tantrumming!) I don't have my clock, that's why I'm late."
"Here are some things you need to think about - you've gotten up plenty of mornings in your life without a clock, you've gotten up every morning the last few days without a clock until yesterday morning, and you've also gotten up around your usual time to use the washroom the past two mornings..."
"Yes, but.."
"...in addition, you need to think about WHY your clock is no longer in your room..."
"Well, that's..."
"...and also think about how many days you could have earned money to buy a different clock and haven't done so. Now, no one asked why you're late and that's not up for discussion. Bottom line - you have things you need to do quickly because you're late."

And with that, Chef slowly moved into his morning routine - which again included 20 minutes of jumping jacks even though we'd discussed that again yesterday. When he came in from exercising this morning, I said that I'd noticed he was still doing jumping jacks. "That's the one exercise I can do really fast," was the response.

When the school bus arrived, Chef was in the bathtub.
"Your bus is here. (Pause) Did you hear? Your bus is here."
"I heard!"
Chef slowly and grumpily came down the stairs trying to get his shirt on over his wet shoulders.
"You need to be moving quickly. Your bus shouldn't have to wait for you."
"Well, you made me take a bath." (The last two nights we've again been discussing hygiene and how sleeping in a bedroom that doesn't smell very good then putting on the same outfit as days before makes for a very unpleasant smell for others plus germs on Chef's body - quick morning baths would be good until Chef has clean clothes. Yesterday Chef opted out but exercised and bathed on his own this morning!)
I opened the front door, then asked Chef if he was going out to the bus or if I should wave to the driver to continue on without him.
"I'm going! I'm going! I just need to get dressed and get my lunch and shoes!"
Chef did up his pants by the front door and, with his shirt hanging around his neck, he tried to wriggle his feet into his shoes without opening them then huffed and bent down to put on his shoes then started down the hallway away from the front door, half-dressed and wearing one shoe.
"What are you doing?"
"I HAVE TO GET MY LUNCH!!"
Chef stopped and adjusted his shoe with the all-too-common appearance of lack of awareness of time or sense of urgency
"The bus shouldn't have to wait for you."
Chef huffed then started walking slowly down the hall towards the kitchen.
"Moving quickly! Bus is waiting!"
And with that, Chef turned around grumpily and jogged to the door, slid his foot into his other shoe and went out to the bus, putting on his shirt on the way.